Monday, December 29, 2008

Bulleted Recount

I have so many photos, video, and thoughts to post that it will take me 5 days to catch up on the 3 that I missed. Here is a quick re-cap to help organize for future posts.

December 24
- Last minute shopping at Best Buy, the package store, and the grocery store on my way home from work. Good think we were "dismissed" at 1pm so that I could get some things done.
- Scott, the kids, and I went to my mother's house for our typical Christmas Eve thing where we spent time with my mother, father, three brothers, sister-in-law, niece, and my uncle and his family. We opened lots of presents.
- Went home and prepared for Santa!!!!!! and went to bed.

December 25
- Opened presents with Scott and the Children. Nathaniel was very excited that Santa ate the cookies that he made and the milk glass was empty. Penny was interested in eating and throwing the wrapping paper and bows. I got a new coffee maker and a copy of Fallout 3 the video game.
- Scott's step-father came over (Scott's mother passed away last summer) as well as Scott's sister with her husband and one of his son's with his girlfriend and her 5 year old daughter. We opened more presents. We also played some Sing Star 2 on the PS3, it was hysterical watching everyone sing better than me. lol!! Nathaniel was excited because he got the one gift that he did not get from Santa, but had hoped to get.

December 26
-Took the day off of work. Good plan!
- Ventured back in to the world for an exchange on a gift from Santa to Best Buy. We also went out to lunch and made it in and out of Target alive.
- Scott and I went out to dinner sans children to his business Holiday party. I really had a good time getting dressed up (and makeup!!) for some nice grown up conversation and superb food at Apricots in Farmington. I was very impressed.

December 27
- We stayed home and relaxed all morning, then we went out to meet some friends for dinner at Buffalo Wild Wings in Windsor. The food was great and the babies were good babies. :)

December 28
- Scott's brother and his family from Virginia came over for a visit. More presents!! It was great to see them and their beautiful children, you will see some photos from this visit I promise! They all seem to be doing well.
- My parents came over for a quick visit to see what Santa brought the boy and to try out my coffee maker.
- One of my bestest friends came over for a late evening (8pm to 11 pm) visit since she was only in town for 2 days. She brought presents as well! I was so happy to spend some time with her.

Sheesh just writing all this really tires me. I hope everyone else enjoyed their Christmas as much as I did. It was wonderful to see so many people that I love.

Thursday, December 25, 2008

Merry Christmas



I pray that you all find yourselves happy and at peace on this joyous day. Merry Christmas everyone.

Monday, December 22, 2008

Happy Birthday Scott!

Nathaniel, Penny and I took Scott to a Japanese steakhouse for dinner tonight for his 35th birthday. We had a wonderful time spending a quiet dinner together. The waiter brought a complimentary fried green tea ice cream sundae after I gave him a candle and asked him to bring the dessert to our table.

Penny ate an incredible amount of food for dinner. I had to wonder if my mother fed her today. lol First, I gave her a stage 3 Gerber food jar to hold her over while we waited for dinner to hit the table. If we are home we typically do not give her the baby food, but I grabbed it as we walked out the door. Then Scott's dinner of hibachi fillet and shrimp arrived. Penny literally ate 1/2 of Scott's steak and 3 shrimp. Not to mention her new favorite: the zuchinni sticks. She kept looking for more of them. I also personally fed her about a 1/4 cup of the hibachi rice, but I think Scott fed her some as well. She was signing "eat" so I then gave her some sauteed onions, she enjoyed the sweetness from the carmelization. After all that, she was screaming for more tastes of the green tea ice cream, so she had about 4 or 5 tastes of that. Then when we got home at 7:30 she had a full bottle of milk before I put her down for the night. Scott began to wonder if she has a tapeworm in there. I mean, where could she possibly put all this food? I have never seen anything like this before. Hopefully she won't eat us out of house and home!

And now that this day is almost done, HAPPY BIRTHDAY SCOTT!!!!

Sunday, December 21, 2008

I am so excited for The Garcias!!!

Bringing Kellsey Home

You can learn all about Renee here.

Friday, December 19, 2008

Penelope with her brothers


One thing that I love about Wickham park is this ancient, retired sleigh that is outside of the Santa cabin. Great for photo ops. Here is Penelope with Nathaniel and her want to be brother, Tanner.

The Santa Visit.


DSC01075, originally uploaded by maxiak.

This was the only half-way decent photo Scott got of the Children with Santa. I think I should have been in charge. hmmm. Anyway, the children had lots of fun and that is the point right?

HAPPY BIRTHDAY!!!


Happy Birthay Melissa! I hope that you have a wonderful day. I miss you and Dillon too and hopefully we can get together soon.

Thursday, December 18, 2008

Has anyone else had this problem?


DSC01090, originally uploaded by maxiak.

My beaver. . . I mean baby, likes to chew into the wood of her crib. The straight sides have a plastic guard over it; however the curved head and end sides are exposed. When she is quiet in her room (or perhaps when light from the full moon pours through her bedroom window, transforming her into a beaver-by) she must be staning at the end of her crib and lick the crib until she finds a spot that she likes to bite into. OVER AND OVER AND OVER AND OVER AND OVER again. I first noticed small bite marks about 3 or 4 months but I didn't put much thought into this because I thought she would grow out of this quickly. I mean, how is this appealing. But I noticed yesterday that the biting has not stopped and it is clear that she is licking the varnish off the rest of the edge. Can anyone suggest something here. I can't think of something that would be flexible to cover the edge the right way, but not be bite-able. Can you?

Can anyone help me?


www.flickr.com








maxiak's items tagged with beaverMore of maxiak's stuff tagged with beaver


Wednesday, December 17, 2008

It was one year ago today.

I had to say good bye to my little 6 month old cutie face and leave her the arms of some very capable doctors and nurses for her second heart surgery to do a complete repair of her Tetralogy of Fallot defect:

And the next time I saw her she looked like this, but with the breathing tube still in. ( I just couldn't take a picture of her with the ventilator.)

3 days later, Scott and I were able to hold her even though she was pretty out of it.


On the fourth day after surgery, she even smiled at me while I gave her a sponge bath. I love my little angel on earth!

And we were so pleased to be able to bring her home on Scott's birthday, Saturday, December 22 so that she could be home with us for Christmas. She had no complications from the surgery and has been doing so well I still look at her with amazement for all that she has been through.

Monday, December 15, 2008

Crisis Averted!

Wow! Do I feel like I was over reacting. I called the cardiologists' billing office this morning and apparently, they were just as surprised as I was when the phone calls started coming in last week. She said that they are still in network with United Health Care and that they are fighting this with them right now. So I was asked not to pay any bills until they re-bill me in January. Hopefully everything will be resolved by then and I will owe the usual $85. What a scare. She was so apologetic and said that this has been a big problem for their patients. She was so nice about it!

Sunday, December 14, 2008

I love my husband!

I almost. . .almost. . .forgot to post, and since I am so incredibly tired, I was kind of at a loss of things to write about. So, I decided I should write about how much I love Scott. He is an amazing man. He made dinner today since I was on my way back from a baptism that was in a different part of the state. He also did all the dishes and did 3 loads of laundry. I am so very lucky to have him. I leave for work at 6:30 in the morning, so he is also the man that gets the children ready in the morning, as well as himself. I realize this is no small feat and I appreciate his hard work. And I love being with him. Anyway, I know you never read this Scott, but if you are, I LOVE YOU!!!.

Saturday, December 13, 2008

New day, New game

One of my other blogger friends continued on this game and it sounds like it can be funny so hear goes: Here are the top 10 things that pull up on Googl.com when I enter "Maureen needs"

1."Maureen needs a date." Kind of funny since my husband took me out to the movies tonight. Thanks Joey for watching the kiddies.

2."Maureen needs your support… “Maureen, please leave the Big Brother House now..."" scary, I didn't know I was in trouble.

3. "Maureen Needs YOU!" Well, I do.

4. "Maureen Needs to Realize Two Things" What do I need to realize?

5. "Despite not knowing a word of Latvian, Maureen needs this one." Actaully, I know several Latvian words. "Cur er vansutubs?" Pauldias. and Lebrett. I don' t know if the spelling is at all correct, but this is the phoentic spelling of these works. My best friend from my senior year in high school was 100% Latvian and she taught me a few words.

6. "Maureen needs hitting with a lump of wood wrapped in barbed wire" OUCH!!! Am I doing the hitting here or am I getting hit?

7. "Maureen needs to read something written by other than her own personal friends once in a while" Well, I am reading the "Truth about Boys" still.

8. "Maureen needs a loan in the amount of 50000 NGN" I don't know what an NGN is, but sure, I will take it!

9. "Maureen needs you to stop crying." This kind of entirely speaks for itself.

10. "Maureen needs a new pair of shoes." Well, right again! Who doesn't need a new pair of shoes.

Friday, December 12, 2008

I am so pissed!!!

I know, I really wanted this to a family friendly website but I am just beyond upset. I feel kind of bad complaining when there are so many people more unsecure with their medical insurance BUT. . . I was opening Penelope's cardiologist bill from Nov 5 that came in the mail today. Jokingly, I said to Scott, "Merry Christmas, here is our cardiology bill." To my utter dismay, our balance is $502. I just didn't understand why the insurance paid so little. We had an appointment back in January and we paid our co-pay of $35 at the office, then the dedcutible of $300 and the $80 or so that was the 10% co-insurance, then another appointment in May where we owed about $80 after the co-pay.

It was only 5:15 pm so I called the insurance company and learned that our cariologist became out of network on Oct. 18. ONLY 2 WEEKS PRIOR TO OUR DATE OF SERVICE. Can you believe that no one told us that they were out of network. I mean come on, how are we to know? I asked the insurance rep that same question and she told me that I could always check online before every doctor's visit. It is nothing short of a miracle when we make it there on time, who has time to check online every time for doctors to be coming on and off network. Besides which, I passed my insurance card to the receptionist when I paid my co-pay, and she could have told us then. I made the appointment in September when there were still in network. I am just really frustrated about this. I even asked the representative for the other pedi cardiologists in the area to see if I could get on the gap exception angle, but there is a dr. in Vernon.

Because Dr. S is now out of network, we got hit with a $300 out of network ded, and then 30% for the co-insurance. Argh!!!

I plan on calling next week to argue the bill, but I think I am more upset that I have to change physicians on Penny. Dr. S has seen Penny since she was 1 day old. Plus we have to do that MRI next year. Any advise would be welcome on this subject.

Thursday, December 11, 2008

Santa Claus is Coming to Town and other ramblings

I just love my little girl. She was so much fun tonight. She was laughing and pointing at things and yelling "DA" She ate her dinner with a fork, rigatoni with mock bololagnse sauce. I think she loved it! I just look in her beautiful eyes and I know she understands so much of what I have to say. When I came home from work, my babysitter asked me what a specific sign meant that Penny has been using. And she did what I know to be Penny's version of "more". This is when she puts her right index finger into her left palm, which is kind of curled. She was so impressed when I told her because Penny was using her sign appropriately to ask for more lunch!

We are going here on Saturday. I can't wait!

Oh, you should pop on by to Jessica's blog, she has a couple of wonderful stories for you.

Lastly, we had Nathaniel's conference today. It was not anywhere as bad as I was expecting. She did not imply at all that my son needs to be hung out by his toes. Even when he has recess taken away from him (which is everyday) she lets him run around for a few minutes to burn some energy. It sounds like his music teacher can't stand him, but she doesn't count, she only sees him once a week. We just need to work on our listening skills. . . .sigh, easier said then done, right?

Wednesday, December 10, 2008

5 Minutes for Special Needs

This was taken in July of 2005, the summer that Nathaniel turned 3 (and I turned 26, heheheh)

My father's family is in CA for the most part and I miss them so much, especially my Nana. I hope I can see you all soon! All these girls are Nathaniel's 2nd cousins, and even though it was pre-Penny, I think back to what a wonderful time we had on that vacation seeing all the people that I love. Thank you all for a great time.

Tuesday, December 9, 2008

Mark O'Shea and Heart Awareness.

"All Done"

She definately says "All Done." My daughter says, "All done." She can say "All Done!" but she doesn't say momma. We are officially broken up.

It is a good thing my son Nathaniel loves me so much that he tells me how bad he feels that I have been in horrifying pain for the past 24 hours. ( I threw my back out yesterday.)

I think I need to go to bed early today and put the heating pad on because I can't wait for this day to be over!

Monday, December 8, 2008

Has anyone read this?

I cannot/ do not want to put it down. Half of me wants to say that the school systems really haven't changed that much and that maybe I am just looking for an excuse for my son's activity level. But then the other half looks to my son and I want to know what I can do to help him. Does anyone else have any opinions they want to share? At any rate, this book "The Trouble with Boys: A Surprising Report Card on Our Sons." has been interesting so far.

Sunday, December 7, 2008

Question

When do you usually put up your Christmas tree?

We just put ours up today. Penelope was fascinated by the tree when she woke up from her nap and realized it was there. Nathaniel was such a good boy helping us with all the decorations. He kept saying, "I love putting the uniforms up." "When can we put the uniforms up on the tree?" Intead of using the word ornaments. It is so funny when they are that age and they use the wrong words. lol.

I will have to get some pictures up soon.

Click here for pictures of last Christmas. Keep in mind that Penny had open heart surger 8 days previously on Dec. 17 to repair her Tetrology of Fallot defect.

Saturday, December 6, 2008

Another Down syndrome story

"When I first started to work on this story, I thought maybe I shouldn't do it. I thought you might see that I have Down syndrome, and that you wouldn't like me.
My mom thinks that's silly. "Have you ever met anyone who didn't like you because you have Down syndrome?" she asks me. She's right, of course. (She usually is!)"

Read the rest of this story written by Melissa, a teenager with Down syndrome HERE.

Friday, December 5, 2008

What Movie Is Your Christmas Most Like?




Your Christmas is Most Like: A Charlie Brown Christmas



Each year, you really get into the spirit of Christmas.

Which is much more important to you than nifty presents.



Click on the link to discover what Movie your Chritmas is like. Oh, and Renee thanks for this post and my favorite Christmas movie is The Nightmare Before Christmas.

Thursday, December 4, 2008

What type of blogger are you?

ESFP - The Performers

The entertaining and friendly type. They are especially attuned to pleasure and beauty and like to fill their surroundings with soft fabrics, bright colors and sweet smells. They live in the present moment and don´t like to plan ahead - they are always in risk of exhausting themselves. The enjoy work that makes them able to help other people in a concrete and visible way. They tend to avoid conflicts and rarely initiate confrontation - qualities that can make it hard for them in management positions.

I AM A SENSOR/FEELER? WHAT?!?!?!?!

Click on the title of this post to get your blog analyzed.

Wednesday, December 3, 2008

More to report

I know you have all been holding your breath and are on the edge of your seats for this late breaking news. Penny's thyroid tests came back normal and there is no indication of Celiac disease. That is a big relief.

Now I want to leave you all with something I found really inspirational. Especially since I am new in Cub Scouting myself. Please take the time to watch this video. You will be glad you did.

Tuesday, December 2, 2008

Update on Dr.'s appt.

Penny had her 18 month check up:

weight: 23 lbs 6.5 oz - 40% on the typical chart
height: 33" - 60% on the typical chart
and her head circumfrence is still in the 4th percentile.

But, she now has an ear infection. I knew something was brewing by the way she always was rubbing her ear, but when she was checked last Wednesday, Dr. S said that her ears looked great. I was so happy that she made it to 18 months without one single ear infection. I should have knocked on some wood! So I was wondering how one has an ear infection on day 6 of antibiotics. hmmmm. She is getting changed over to oral ancef (whatever that is called these days) and she will be on that for 7 days. She just can't catch a break. At least she hasn't had a fever since Saturday. Ok, I need to find a forest to knock on now!

Day 2

Well, today we go to Penny's 18-month well baby check up. I will update later on how that goes. I just feel so bad for her because she is certainly not well. She hasn't had a bowel movement since Saturday (and that was a little one), and she still has a crackel in her chest. POOR BABY!!! I hope she gets back to her normal soon.

Monday, December 1, 2008

Day 1

To start off on my new blogging adventure for the month, I am going to try to post some Down syndrome stories that I come across. I know, I am just tryng to make up for October to stifle the guilt! But humor me.

This story will be aired on the Discovery Channel's Mystery Diagnosis in February of 2009. This litle girl ended up being diagnosed with translocated mosaic Down syndrome. Penny's boyfriend, Dillon, has mosiac Down syndrome. However, she was not diagnosed until almost age 3 due to her very mild symptoms. You can read all about her and see pictures here. This post is very imformative about the different types of Down syndrome.

"Hannah was born April 11, 2000 weighing in at 9 lb and 20 1/2 inches long. She developed and hit all milestones at a typical level. She did have projectile vomiting along with constipation issues however these were addressed as allergies and add more fiber or water less iron less lactose etc….. she started getting ill with every virus cold flu and cough around December ‘02′/ January ‘03′ and I noticed a Cobalt Blue color bruise on her right shin, when I questioned that I was told wait a month and watch it… when I questioned her illnesses–well it could be this or that…. while she was ill she complained of severe leg pains and cried to walk or play stumbling at times, she was pale and so on…
March 27, 2003 she was diagnosed with Leukemia a rare form (Myelodysplastic Syndrome) and admitted to Children’s Hospital of Pittsburgh. During her initial high dosed chemotherapy it was discovered she had a chromosome translocation ( small parts of her #1 and #19 switched places) as well as trisomy 21 with monosomy 7. At the time we had no clue she had these abnormalities or extra cells. Further testing showed she had a mosaic Down syndrome, this was effecting about 5-10% of her cells, she was never diagnosed before or after her birth with any of these until her leukemia diagnosis in 2003."


Again, please click here to read the rest of Hannah's amazing story. And she is so cute!

Sunday, November 30, 2008

Thanksgiving video

http://www.youtube.com/watch?v=LL7ksbaEzvw

Until they use Penny as the thumbnail and not myself, please get to this video by using the link above. lol

Thanksgiving photos

Here are the Thanksgiving pictures finally:

The four of us sitting down for dinner.

My GQ man before we left. He got into a lot of trouble for wearing that hat in Massachusetts!

Again, before we left, this is Penny calling her Dada on the phone.
A couple of other pictures of the 2 kids before we left.

Notice to the right

Ok, I know I really wanted to do Tricia's 31 for 21 Getting it Down posting extravaganza, (but failed miserably) but I wasn't, you know, into my blog yet, and I feel that I have really come around and out of my shell for this month. So, here it goes, I am going to take the monthly themes as advise and see if I can't blog every day next month. It is December, how can I not have things to write about, right?

21 things that are not about Down Syndrome

I admit, sometimes I need some inspiration for blog posts (don't we all). So I thought I would post 21 things about Penny that don't have to do with Down syndrome. I tag Mel and Dillon and anyone else can consider themselves tagged.

1. She still has cradle cap and she is 18 months old. When will she get rid of this??
2. Penny loves to play peek-a-boo.
3. She loves it when she gets attention from her older brother Nathaniel, but. . .
4. Does not like it when he tries to pick her up or hold her, she prefers his attention while she is in mommy or daddy's arms.
5. Penny will eat anything if it is in tomato sauce. Including vegetables!
6. She likes to hit us in the face. Scott and I are trying to get her to stop, but she likes to see us in pain I guess.
7. She loves music and likes to dance along to along.
8. Penny thinks it is funny when she throws food on the floor. It is her way to defy us or something.
9. She likes going "bye-bye in the car."
10. Her feet stink all the time and we have no idea why.
11. She likes to share her food and drink by putting things to my mouth or her daddy's mouth - even when the food is soggy with her saliva.
12. She can say "dog!" when she sees one in a book or on TV; in person, she is afraid of them.
13. Penny has been pretty much sleeping through the night since she was 3 months old (with a few exceptions when she is sick or after her 2ND surgery), but. . .
14. She wakes up a 6 am and we cannot get her to shift her schedule even when we put her to bet later and later.
15. Penny loves Spongebob Squarepants, who doesn't???
16. She hates it when I rub her hair, she is probably afraid I am going to pick at her cradle cap or something! lol.
17. Penny likes to play with tea set and then put the cups and such back in her container.
18. She LOVES her daddy and he will win every time.
19. She has a babysitter that comes over 3 days a week and her grandmother watches Penny 1 day a week.
20. Her favorite word is "Dada!"
21. Her mommy and daddy think she is the cutest little girl in the world!

Saturday, November 29, 2008

My Dearest 18 month old

Dear Penny, today, you are 18 months old. I look at you sitting on the living room floor sick and miserable, and I wonder when you will be feeling better. I love you and it breaks my heart that you are so under the weather. I am thankful that you are interested in drinking some apple juice this morning. Last night you wanted nothing to do with anything that had to go into your mouth.

You have changed so much in the last 6 months, and 18 months seems such a lifetime ago for me.

Let's see, since May you have begun to put yourself in a sitting position on your own. I was so happy when you learned that trick. You seem to cruise all over the place, so I like to set up the chairs around the room for you. Although I bet you will not be in the mood for it this weekend. *update, I just had to take a break from this post because you wanted me to help you walk from the coffee table to the dining table.* I guess you are feeling a little bit better today.

You say a couple of worlds like Dada and dog. And Sara the speech therapist seems to believe you say "all done" and "what's this." It does sound like you could be saying these things, but when are you going to say "mama?!" I would think that is more important then these other worlds. That's OK though, in time, you will say mama.

You started to crawl on your hands and knees, abandoning the military crawl you were so good at. Sometimes you even move on you hands and feet! Daddy said he saw you go into a standing position from the inverted "V," but I haven't seen it yet. Someday in the near future you will be walking, but I can wait. You just take your time for the walking piece. Yvette, your physical therapist, is very proud of the progress you have made and I feel the same way!!

You are no longer the fragile baby from last year, you are a big baby that makes her opinions known. It was such a quick change from baby to toddler, even though you are not toddling yet. You are very vocal and quick to let us know if we are doing something you don't like/want, like going to bed, or changing your diaper.

Bath time is probably one of your favorite times of because you love to play and splash the water so much. You also like to play with your doll house and tea set. For some reason, you love to hit me on the belly s hard as possible and wait for my painful reaction. I don't know why this is so funny for you, you must like to see me in pain or something.

Feeding time has gotten more interesting. You really try to so hard to use your fork even though the food just won't stay there. But you sure get an A for effort. You have also been drinking a lot out of your straw-cups. Good for you!

I know your first 18 months of life brought a few painful experiences and a couple of close calls, but I thank God we were able to keep you alive through technology so that we could get to know you and love you.

I can't wait to see what kind of person you will turn out to be. I love you!!

Friday, November 28, 2008

did I mention

I took her to the doctor Wed afternoon because of a fever on that day and she was diagnosed with walking pneumonia. She has been on antibiotics since Wednesday evening so I hope she will start to feel better soon.

And not so I sound like a horrible mother, I did ask the Dr. if it would be ok to take her to OSV on Thanksgiving, because if he said no, I would have stayed home for sure. He said that the fresh air might do her good and that it really is up to how miserable she is.

Thursday, November 27, 2008

Happy Thanksgiving!!

I hope everyone had a fabulous Thanksgiving. Nathaniel told me he is thankful for God, because if it wasn't for God, none of us would exist! lol.

We were able to make it to Old Sturbride Village for a Thanksgiving banquet. We got there early since we wanted to look around the living museum, but Penny was just so miserable. I felt so bad but we paid a lot for these dinner tickets so we tried it out and Penny made it through dinner ok with the help of some Tylenol. Then I took Penny back to the car so Scott and Nathaniel could enjoy another hour or so of the museum and she slept the entire hour and a half as well as the 45 minute ride back home. Then she slept until 5 or 6 when we realized that she was burning up. Scott took her temp and it was 104.1!!! I called the pediatrician's office first and left a message with the answering service to make sure that a 104 temp doesn't mean she should go the hospital. 40 minutes and a 2nd phone call to the answering service to make sure I had given them the right number for the doctor to call, and we just gave her more Tylenol. By the time we did get a call back at about 8 pm, she was feeling well enough to have dinner and terrorize our living room as usual. Since she was playing the dr. wasn't too concerned.

But we did have a lovely dinner. There was ham, turkey, apricot glazed carrots, broccoli and cheese Au gratin, mashed potatoes, a crudites table with home made pounded cheese, mac and cheese, and homemade cranberry sauce that was out of this world. Not to mention butternut squash bisque and salad fixin's. The desert table was wonderful too. There was this Indian bread pudding that was delicious. Their coffee was so wonderful too that I swear I thought there was alcohol in it. lol. I just wish Penny could have enjoyed it more.

Well, good night!!! I will post pix this weekend when I have more time I am sure.

Tuesday, November 25, 2008

Thanksgiving is in 2 days

I can't believe Thanksgiving is almost here. This has been some kind of crazy fast year. I am thankful for all the friends and family that I have that continue to support me and be there for me. Thanks guys!

Sunday, November 23, 2008

Penny is well!

Penny woke up today at 7am. Without a tantrum! Oh, she was still a little phlemghy, but she is a much happier baby. Yay!

Saturday, November 22, 2008

Prayerss for Dillon

My friend Mel is having her heart broken tonight because Dillon is not feeling well. Please pray that he had a mild bug and that he will be getting better soon.

My Penny was doing better during the day, but I am very concerned what tomorrow morning is going to be like. I hope that it is not worse or as bad as this morning. I don't like to see her so upset!

Poor Penelope!

Yesterday morning Penny was up at 6:30 screaming because she couldn't breathe comforatbly. She had stridor (Does your child make a harsh, high-pitched sound when he or she breathes in (stridor)? and had that croupy cough that makes you worried. She seemed to calm down quickly so I went to work and left her with Scott.

Well, this morning, she woke up alarmed about at 5 am. Not only was she breathing funny due to the stidor and the croup, but she got her self so upset she would go into these fits where she made herself really stiff and with her clenched hands she would rub and hit herself all over her ear-temple region on the head. This was accompanied by an even more shrill scream. Her poor throat must have been on fire. She wouldn't take liquids and there was nothing we could do to calm her down. She didn't seem to be turning blue and because she was crying loudly we knew she was breathing somewhat, but no parent wants to see their child in so much pain. At 5:40, yes, forty minutes, I was starting to think we should take her to the ED because I was so concerned that she was not going to be able to calm herself and breathe right. Instead I called the pediatrician and was told by the answering service that I would be getting a call back from a nurse first. Now, I have a lot of respect for nurses, but if I wanted to talk to a nurse I could have called my insurance company's 24-hour helpline. I told the answering service about her heart defect and that I would really rather have the doctor call me, but she said that this is how it is done now. Does this seem wrong to anyone else or am I over reacting? I don't know. The nurse called back within 5 minutes and suggested we run the shower. The steam did help and after the 15 minutes or so Penny seemed happier. She stopped crying and even smiled a bit when I played our "Peeyew stinkie feet!" game. We were called back by the nurse and she listened to Penny's breathing over the phone to tell us that we could bring her in during office hours if we wanted to. (Our pediatrician has 9am to 12 pm hours on Saturday.) I decided not to because, they aren't going to be able to do anything for her. Croup just has to run its course. I just feel bad because it is clear she isn't moving that phlemgh that she is trying to hard to get out.

Does anyone else have any suggestions out there? She has been playing fine since we got back up at 8am (yes! she went back to sleep thank God), and she ate a pretty hefty lunch, but I am worried for tomorrow morning.

Friday, November 21, 2008

Go Aledo!

sorry if my linking abilities didn't work earlier.

You can purchase this through the website at www.newfamilymusic.com. Enjoy!

An Early Christmas Gifl

One of my co-workers brought in a CD for me and Penny for Christmas. I have never heard of this before but it is "God Doesn't Make Mistakes." I of course had to listen to it at work and now I can't stop crying! I didn't have a prenatal diagnosis, but my feelings are not far off. You can visit their website to purchase a copy for yourself here.

Here are the lyrics:

Lying in the dark, staring at the ultrasound.
The doctor shakes his head, says "I'm sorry but this baby has Down syndrome.
And I know it's hard to decide,
But she's so fragile that she'll probably die,
And it might be a blessing if she did"
Little did he know we're all the more blessed 'cause she lived.

Chorus:
And no, she's never gonna look like the other kids
And she may not learn to talk like the other ones did
And I guess she's always gonna walk just a little behind, But I don't mind.
'Cause she lives her whole life without one trace of guile
And she lights up the world with that crooked little smile
and she loves you with a love so pure it just makes you heart break.
And I'd like to tell that doctor,
God Doesn't Make Mistakes.

Sittin' in the park, watchin' all the children play.
My daugher walks up, they get quiet and little afraid.
But pretty soon the smiles come over their face
And they slow their game down just a pace
And I watch as a spirit of kindness abounds
And thank God for that girl who showed me what life's really about.

(Chorus)

. . . And she helped me to discover
God Doesn't Make Mistakes

They said something went wrong
But I think something went right
And I'll fight for my baby with all of my might.
'Cause I love her with a love so pure it just makes my heart break
And I want to tell the world,
GOD DOESN'T MAKE MISTAKES


written by Steve Moser

And of course there is a cute picture of a beautiful girl with Down syndrome on the cover. I love this gift!!!

Christmas Cards

When you are making out your Christmas card list this year, please consider
including the following:

A Recovering American Soldier
c/o Walter Reed Army Medical Center
6900 Georgia Avenue,NW
Washington,D.C. 20307-5001.
If you approve of the idea, please pass it on to your e-mail list.

Thursday, November 20, 2008

Random Ramblings about Me

I know, this blog is supposed to be about Penny. But hey, I am just as interesting and you know Penny is just doing so well that I don't have that much to talk about when it comes to her.

Actually, I do have one update about her that I can share. Scott is finally taking her to get her first blood draw for thyroid testing. I know, we should be on test #3 by now. Apparently we are really bad parents. (shame) If you notice on my link list, there is a comprehensive listing of things to have routinely checked for on your child with Down syndrome and I have ignored this.

Anyway, back to me. Last night I stopped by the Boy Scouts of America store to finally purchase my uniform shirt and all the related accessories. Nathaniel is just so excited about this and he cannot tell me enough how much he loves me when we are doing scouting things together so I know this is a great thing to do with him. I might even go all the way with him in cub scouting. I mean, what kind of message would that send if I quit? And it is only one hour a week, right? lol. When I showed him all the patches I had to sew to my shirt, Nathaniel said to me, "Mommy, it is almost Friday. You better hurry up and sew these on!" And wouldn't you know that when I called to check on him before he went to school, he asked me if I started sewing yet. I admit I was up pretty late working on this, and he was already asleep, so his concern was really sweet.

I am really having a good time with this Cub Scout stuff and by the time Nathaniel crosses over to Boy Scouts if he chooses, it will be right in time for Penny to be in 1st grade (hopefully) and she will be ready for Girl Scouts. I have already planned my out!

But for now, peace out Cub Scouts!

Wednesday, November 19, 2008

My Firsts

Well, I considered myself tagged by Rene at Kennedy's Place, so here goes:

1. Who was your FIRST prom date?Tato. He was the premier skate boarder in Manchester and I didn't have a date to my Junior Prom so I asked him to go with me even though he was 21 years old!

2. Do you still talk to your FIRST love? Through myspace occasionally.

3. What was your FIRST alcoholic drink?probably beer

4. What was your FIRST job?Babysitting, same as Rene, I even took a Red Cross class through the Girl Scouts to certify me.

5. What was your FIRST car?If you don't count the 1984 Plymouth minivan that was a 5-speed that my parents let me drive when I got my license. . the 1st car I purchased, and that was in my name was my 1992 Dodge Shadow (also a 5-speed).

6. Who was the FIRST person to text you today? I rarely get texted. It I didn't get any today.

7. Who is the FIRST person you thought of this morning? Scott, I couldn't tell if he was still in the bed with me. Ever since we got this king size bed I feel lost!!! :)

8. Who was your FIRST grade teacher? Mrs. Bono.

9. Where did you go on your FIRST ride on an airplane? I was a few months old and I took a trip to San Francisco to visit my father's parents with my father and my mother. I don't remember it.

10. Who was your FIRST best friend and are you still friends with them? Stephanie, but we don't connect anymore. There wasn't a fallout or anything, we just don't have a lot of common interests anymore.

11. What was your FIRST sport played? Me?? Sports? Surely you jest. I did join the Club Team Women's Ice Hockey Team at UConn. I didn't get to play one game because I hurt myself right at the start of the winter semester.

12. Where was your FIRST sleep over? Stephanie's house

13. Who was the FIRST person you talked to today? Penelope of course. I went to check on her and change her diaper before Nathaniel and Scott woke up and before I left for work.

14. Whose wedding were you in the FIRST time? My Aunt Bonnie? I was a flower girl.

15. What was the FIRST thing you did this morning? Jumped in the shower.

16. What was the FIRST concert you ever went to?Ozzie Osborne when I was a Junior in high school. The best part was, when I got there, I found out that Korn was opening! I was way into Korn, but didn't care too much about Ozzie.

17. FIRST tattoo or piercing?My ears when I was 7 and then I got the one tattoo when I was 18 and a half.

18. FIRST foreign country you went to? Portugal with my Catholic Youth Group when I was 15. It was a really great time.

19. What was your FIRST run in with the law? Seriously, it must have been was I was 2 or 3 and I decided I would go out and ride my tricycle around the block in my birthday suite while my mom was taking a nap with my infant brother. Two officers saw me and escorted me back to my home. Good thing I knew where I lived!

20. When was your FIRST detention? I honestly don't think I ever had a detention. Maybe one in Catholic school when I was 10 or 11 when I forgot my homework once. I never forgot to do my homework again!

21. What was the FIRST state you lived in? Connecticut, I have only ever lived here.

22. Who was the FIRST person to break your heart? Scott

23. Who was your FIRST roommate? What's her name from the Ukraine at UConn. Vicki?

24. Where did you go on your FIRST limo ride? Out for some games of pool.

I personally tag Melissa, Jessica (you can take your time), Erin, Gina, and Sarah.

Wordless Wednesday


Monday, November 17, 2008

Vote for Kayla

I know I haven't put her on my blogroll yet, but the fact is, I have been following Michelle and Kayla since about the time she announced she was pregnant with Lucas. I am so happy that Kayla made it to the finalists because I really think she is so gorgeous. Please go and vote for her on this Prego contest so that Michelle will have some spending money while her husband goes back on duty.

What are you waiting for, go and vote already!! Kayla is #4 and you can also visit her at Michelle's blog, Big Blueberry Eyes.

Good luck Kayla and Michelle, you already have my vote (and Penelope's vote)!!

I am so Excited

For Penny! She is just so close to walking. She is so happy with herself. I try to set the dining chairs all over the living room in different compositions so she can cruise herself to where ever she wants to go. :)

Tomorrow morning I get to help chaperon for Nathaniel's 1st grade field trip, wish me luck. I love hanging out with a bunch of crazy 6 year olds. Hey, that must be why I am into Scouting!
Speaking of scouting, I spent 8 house at a Cub Scout Pow-Wow on Saturday. I learned so much and I am so excited now to be a Tiger Cub Scout leader for those boys. I can't wait to apply what I learned!

GO JOEY!!!

Joey is going in for surgery today for his malrotated bowels. Please, everyone, pray for an uneventful and quick surgery and that he has an easy recovery. He is such a cute little man and we want him to get to his good old self as soon as he can!


GET WELL SOON JOEY!!!

Wednesday, November 12, 2008

Prego Photo Contest


Penny is being submitted into the contest hosted on 5 Minutes for Special Needs. Please check out the contest yourself and you may even win a $500 gift card for grocery shopping.

How Wonderful

Please, please, check out Dave's post today, as it brought tears to my eyes.

Tuesday, November 11, 2008

I want to EAT HER UP!!!


Question of the Day

What do you do when your 18 month old is up 3 hours past her bed time and she is not hungry, or feverish but she (or he, this is hypothetical right?) just whines and cries with no end in the crib and will not settle in if you try to lay down in the big bed? This same 18 month old is happy to play though if you take her (or him) out of the crib!

Monday, November 10, 2008

Today is the first day of the rest of my life

www.my-calorie-counter.com     The webs free Calorie Counter


I am going to do it. I need to lose some weight, and by some, I don't mean a litte. I mean A LOT!! Scott bought us both gym memberships and I plan on using mine. Go me!!

I will be keeping the ticker at the way bottom of the page in case anyone is interested in checking my progress.

Sunday, November 9, 2008

Mike and Nathaniel at the Cape

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Christmas Pictures Nightmare

We went to Target today to get our Christmas pictures done. I think I am really happy about how they turned out, it is just that there was so much craziness going on and it all happened so fast. I might have to go back to get more of Penny. She was not in a good mode. Here is the dress she was wearing. Nathaniel was so well behaved that he won his prize at the end. An Indiana Jones Legos set (the cheapest one they have there).


Oh, and if you are surfing and have nothing better to do, please go see some pictures on Flickr of me having a great time partying with some friends. I got to go the Burlington, VT sans children and husband a couple of weekends ago and I can't remember when I had such a good time. Here is a picture I grabbed of my good friend Irene before I had to bring her back to the airport.


Saturday, November 8, 2008

My Comment to Adelynn's Journy

I was inspired to write about the first time I had to turn into a bitch for Penny's sake, by Adelynn's mommy's post. When Penelope was a month old to the day, her wound incision appeared to be infected, so we went to the cardiologist office (it happens to be in the children's hospital here) and she was put on PO antibiotics. At 3 am the next day, I could tell the infection was getting worse so we brought he to the ER at the children's hospital for a course of IV meds. She hadn't gotten a fever at this point so we knew that everything was going to be alright.

Penny's first IV was put in at the ER and to my knowledge, that 1st dose at about 6 am went in fine. With her noon dose, it was clear that the IV had infiltrated so the IV had to be removed. The doctors didn't feel they needed to do anything until her next dose was due so around 4:30 this TOTALLY HOT SWEDISH resident, Dr. Thor Thorenson (I am not making that name up, I swear to God), came in to tell me that he is really good with babies. I told him that she is a hard stick and could we just call the NICU nurses? He replied that they were too busy. So, 35 minutes later I could still hear her screams down the hall since I had to leave to room at some point. I came running back in to stop the evil torture, but learned that Dr. Thor had ceased as well. I asked him what the plan was. Even though I had been up for 14 hours at this point and it was only 5pm, I knew that this was necessary so my concerns were more that I wanted her to have her medicine and not so much her comfort. He told me that he wanted me to try to feed her to allow the veins to plump up more and then he would try again. I asked him what other options we had in case he couldn't get the IV in again. He suggested a vein in her scalp, but that usually doesn't work for babies because they shake their head a lot and it could push out the IV. I looked at him and told him that doesn't sound like much of an option then. So he left to give Penny time to calm down for round 2.

As soon as he left the room I tried to think of how I could take matters into my own hands. So I picked up the room phone and I CALLED THE CARDIOLOGISTS OFFICE'S NUMBER. Never mind that it was 3 floors below me. I spoke with Dr. Iyer, and I told him that I wasn't happy with the level of care I was getting. I told him that my daughter was 4 weeks old and that what I wanted was a NICU nurse to come over to do this. He then said the words any mother would have been happy to hear: "I will absolutely do that for you." He also asked why this wasn't already done and I told him that Dr. Thor advised they were too busy over there. I don't think he liked that answer.

About ten minutes later, Dr. Thor then walked in to discuss "The plan" again. I finally interrupted him to tell him that I used the phone to call Dr. Iyer and a NICU nurse was on the way over to do {what he couldn't do.} This was the best reaction in the history of reactions that I have seen in real life: his jaw dropped open and he stared at me for a moment to think about what he was going to say next. I mean, how dare someone call a doctor on a phone while you are in a hospital, it sounds crazy right? One minute later, my favorite NICU nurse Rhonda, showed up with an APRN and they got to work. Within 5 minutes and with no tears the IV was in!!! God those nurses are good!!! I am sure Penny appreciated the change in venue too.

Friday, November 7, 2008

Been Thinking a lot of this song

I guess there is a cover out there of John Lennon's "Working Class Hero" by Green Day. You may have heard it. The beginning of the song really sticks with me on this version. I am not sure if the lyrics are the same or not.

AS SOON AS YOU'RE BORN THEY MAKE YOU FEEL SMALL
BY GIVING YOU NO TIME INSTEAD OF IT ALL
'TIL THE PAIN IS SO BIG YOU FEEL NOTHING AT ALL

I wish we all had more time to stay home with our babies!!!!!

Tall things at home

Penny sure is getting ready to walk. I know I could be saying this for the next 6 months, but what can I say - I am proud of her! She lets go of the coffee table and stands for almost a minute before she plops on her butt. I can't wait until I can stop carrying her heavy body everywhere.

Wednesday, November 5, 2008

The Penny Montage

Pushing 25 lbs!

WoWsers!! Penelope tipped the scales at 25 lbs and .4 oz. That is of course with all her clothes and her leather shoes, not to mention the full diaper. The visit went well enough. I confirmed something I found online that Dr. Mello moved to New Orleans. Katie, his PA, now works solely in the P.I.C.U. I asked Penny's cardiologist who will do surgeries now and the answer is that they no longer do pediatric cardiac surgeries at CCMC. If a family needs heart surgery on their child, they either go to Yale or to Boston Children's Hospital. How sad, how very, very sad. It was such a relief knowing that my child was having surgery so close to home. But I guess you can't have it all. Some states don't have facilities like this such as VT, and they are hoping this is temporary, until they find someone else. . . .

But, now on to Penny's visit: Her VSD patch looks great, and the homograph conduit looks good with only trivial leakage. I was informed that you are never going to get a conduit that doesn't have some leakage. I asked about the muscle tissue growing on the right ventricle (Right ventricular hypertrophy), I was told that for now the size of her right ventricle looks good. As the conduit begins to fail, the heart will try to compensate and that side of the heart will enlarge some more, but we should be a long way off for that. Her EKG was normal. The only cause for concern was the size of her right pulmonary artery. You may recall in a post from last May at her last visit, my concerns laid with her left p.a. and how very happy we were that it was not as stenotic as it may have appeared during a cardiac catheter procedure in Nov 2007. Well, this time, it is the rpa that seems to have us guessing. It isn't a matter of it looking bad, it is more of a matter of her not being able to get a great look at the rpa. There may be scar tissue blocking the entrance, or it may be a shadow. Hard to tell in the echo cardiogram. So, Dr. Salazar recommends an MRI just to be safe. I am sure I was worried over nothing in the days leading to her appointment today, but now I have to worry some more until we get a better picture on the MRI. Worst case, they do another catheter to balloon up the stenotic rpa, WHICH IS NOT THAT BAD but still, I have to wonder. . . and wait!

Forgot to mention

The orginal purpose for me to post was to announce that Penelope is having her cardiologist check up today at 1pm at CCMC. I know she is doing well. She is a healthy 23 lbs, she is very active and she looks pink! But of course I am going to worry. I will post more and advise on how the visit went. We are hoping to be surgery free for the next 5 years at least!!!!!

November 4, 2008

Ok, so I am upset the Obama is the next president of this great country. Really, really, upset, but at least I know I went and voted yesterday to show my support for McCain in this Blue state.

I am more upset over the recent additional layoffs in my office yesterday. November 4, 2008 will not be remembered as a great day day in my life.

However, I did have some fun at Joey's place -well, it is really Jess and Pat's, but they let him stay there :). You can head over there and see some photos of the kids playing. Even Nathaniel was getting into it. I think we need one of those blue tube things in our home to play in.

We really miss Dillon and Melissa, my life has been so hectic I cannot say when I will be able to get together with them again! Especially with all the boy scout stuff in there. Maybe Sunday after our portrait session at Target. Maybe. . . .

Also, I need to welcome Rainer into this world. He was born on Halloween and is a wonderful addition to the family that was 3 and now 4 : Tricia, Alex, and Georgia!

Let's see, can I sneak anymore tags in my blog post today. :)

I can't wait to upload my Halloween pictures. More of that to come.

Thursday, October 23, 2008

THE JOB MARKET

As some of you know, I was technically laid off. I know it sounds bad, but I was given a 10 month notice and I will have some severance. This does, however, come at a very stressful time. Many places are on a hiring freeze right now. At least I have the luxury to wait it out, but there is a gamble that things will get a lot worse before it gets better. I don't know, I am not that worried about it. I think that I will end out ok. . .

Oh that Penny

She likes to wake up around 11 or 12 screaming at the top of her lungs. Could she be having night terrors? But she is way to cute for that.

Monday, October 20, 2008

Speech Therapy


So she finally had ST. About time!! Well, I think it went really well. The ST sat there with a toy and practiced "in and out" and "on and off" and "all done". She was impressed that Penny can follow some simple directions such as "go get it," because when she throws a toy across the room it is her responsibility to get it; and "can I see?" when you need something from her before she puts it in her mouth.


Penelope also eats almost anything now. Her favorite is meat generally. She loves salmon, steak, chicken, turkey keilbasa, and hamburg. She will tolorate brocolli and carrots, but she really likes spaghetti, rice, and noodles. She tries so hard to use that fork. It is very frustrating when she can't get the food to stick to the fork!


I found a new blog today through Master Dillon's blog. It is this blog. I hope I have time to read it every day as I would love to get to know Sarah.


Scott signed me up to be the Tiger den leader for Nathaniel and I have just been so busy lately. I am having a lot of fun guiding the little ones. :)


This summer just seemed to wiz by. In August we went to Eastham at Cape Cod and we had a really wonderful time. Penny and Nathaniel loved the beach. Good thing I splurged for the water-proof liner on his cast. By the way, he got it off on Sept. 3 without any complications.


Penny and I went with Melissa and Dillon to the Buddy Walk on the shore in CT to raise money and awareness for folks with Down syndrome. After that we went shopping at Tanger Outlets too :).


I had an Usborne book show last week with Jessica. This Christmas will be the year everyone got books. Including Scott because, who doesn't need to read more?


Mostly, I have just been busy trying to keep the house clean and knitting this sweater for Penny. I started it in July hoping that I will be finished in time for the winter because I know how slow if a knitter I am. I am almost there.


Friday, August 8, 2008

Nathaniel caused some trouble

Here he is actually just faking it. I asked him to make a face!!
I was trying to get a good picture of how swollen his arm was.
That lollipop must have kept him occupied!! Here, the waterproof liner is going on.
Now, the cast is being rolled on, I guess this wasn't too bad for our brave hero.
TA-DA!!!! I'm healing.

So, as I said in a previous post. Nathaniel is in a cast!!! On July 25, the day before the picnic, I got a call while at work from Nathaniel's day camp that Nathaniel fell from the monkey bars and was upset that his wrist hurt. They weren't sure if it was broken or not, but as the counseler said, "I'm not a doctor." I picked him up as fast as I could and off we went to the pediatrician. I had picked him up at 10 am. At the pediatrician visit we were refered to an orthepedist (and they set up the appt for us), but the appt wasn't until 2:20. I was told that they squeezed Nathaniel in so I might have to wait awhile once I got there, but to get there early to do paperwork. Well, we took a lunch break and went to Burger King for lunch, and then to Friendly's for ice cream since we had so much time in between. Wouldn't you know that my kid did not cry this whole time and barely complained. I was so proud. We got to the orthepedist at 1:50 and we weren't seen until 3:15 and then they had to take x-rays! There was a confirmed buckle fracture on Nathaniel's left arm, near the wrist. He was finally casted at just before 4. What was truely remarkable to me was his attitude. These are just a couple of Nathanilisms from that day: "Good thing I broke my left arm and not my right." "Good thing this happened in the summer, because my winter coat wouldn't fit over my cast." and "Good thing they have yellow casts because yellow is my favorite color." The only down side to this is that Nathaniel does use his left hand to wipe himself, but he has adjusted I am sure. They even have waterproof casts now. It was an out of pocket expense because, of course this is a luxary, but it was worth the $55 this being in the summer and all. We have the Cape to consider, and the picnic, not to mention he was going back to that camp where they have morning swim and afternoon swim!!

Down Syndrome Picnic

I must be really dumb because this was entirely too hard for me. Does anyone else have issues with Flickr?



www.flickr.com



Tuesday, August 5, 2008

where have I been?!?!

I know it has been a whole month since I last posted. This July was insanely busy. I such kudos to the mothers out there that find the time to blog daily. This is just a quick note to please stop by another blog to catch up on Kennedy. She is such a cutie! Please keep her in your prayers!!


Once I get all my photos uploaded I will update you on what a crazy July this has been. Penny is doing great!! Nathaniel is in a cast!! boo!!!

Tuesday, July 8, 2008

She finally did it!!

I was so happy to see Penny put herself in a sitting position all by herself today!!! She is such an amazing baby and everyday she shows me something new that blows me away. She lays down on the ground and puts herself onto her hands and knees, which is funny because she doesn't crawl that way. She still slinks along on her belly. Then she sits back on her butt putting hersef in a folded in half position and then she pushes her back straight up. What a cutie!!!

Sunday, July 6, 2008

Everybody say Hi to Dillon

Penny had a date last night with her friend Dillon. She kept trying to steal his glasses. I felt bad for him until later on when he was shrieking with delight, he scared Penny to tears. Other than that they had a really good time, I think. And I had a good time with Mel, Dillon's mother. Sometime we will need to leave the babies at home and go out without them.

Friday, July 4, 2008

4th of July

Happy July 4! I can remember 6 years ago today it was about 106 degrees and I was 40 weeks pregnant with my son Nathaniel. My due date for him was the 4th of July, and I was so miserable. It was a Thursday and it was hot. I had been working at TGI Fridays but I took my last day on June 26. Not because I was uncomfortable running around, (my feet were more swollen with Penny then with Nathaniel) but because my very close friend, Irene had come up from Arizona just to witness the birth of my son and she wanted to get in early so that she wouldn't miss it. On July 4, I am sure Scott was working at the Outback that night and I was at my parents' house enjoying some cookout food. It wasn't until Saturday morning that I went into labor with him. I feel as though it was yesterday. I can't get over the fact that my little boy is soon to be 6 years old. Where does the time go. And on that note, I have a birthday this month too. I am turning 29. . . for the first time! yeesh!

Today we are going to see Matt, this is Scott's step-father. He moved into his new place on May 31 and I am ashamed to say we have not seen it and I still don' t know where he lives. We have been very busy watching my friend's child and best friend of Nathaniel, Tanner. Penny and Nathaniel are being watched by Tanner's mother Angela during the day, and we are watching Tanner in the evenings. Anyway, I am very excited to se his new place today and have a 4th of July cookout!

Penny is doing well as always. I swear she gained another 12lbs this week. She is scooting all over the place. Sometimes her belly is off the ground for a few seconds. I hope she is learning that the crawling works a little better with the belly off the ground. She still refuses to say "mama." I am trying not to get too frustrated. Maybe she thinks that we are both a "Dada, " I don't know. The speech therapist is impressed with her vocal talents, however.

Her friend Dillon is coming over tomorrow night to have a party while Nathaniel and Tanner go to the fireworks with Scott. Girls like to party!!!

Wednesday, June 25, 2008

Heart Link I discovered

I never realized that the Little Hearts Website linked you to a John Hopkins tutorial website that gives really great visual information on all the different kinds of heart defects. I finally understand what an overiding aorta means when reading the information on Tetrolgy of Fallot.

Friday, June 20, 2008

All in a day's hard work

Penny is executing her military crawl with such perfection; I am afraid she will be recruited anyday. She is so funny, she will get on her elbows, belly, and legs and with one arm in front of the other, and some help from her hind quarters she inches along the floor. I don't believe her belly gets a millimeter off the floor, but it certainly gets her around very effeciently. She can transverse our living area in a matter of moments. :) I just love her so much. Her PT is very proud of the progress she is making. She has been pulling her self to a standing position for awhile now (maybe a month) but she needs to be in a sitting position first and to my knowledge she has not figured out how to get into a sitting position.

She is doing very well with mealtimes too. I like to give her an opportunity to feed herself with a spoon often. Scott doesn't approve because of the mess, but how else is she supposed to learn? She likes sandwiches, peanut butter and jelly and grilled cheese being the only two she has tried. She also likes Gerber graduates ravioli. She will scarf that stuff man! She likes ice cream and yogurt. A whole world of possibilities opened up just a few weeks ago when she turned 1.

I am still working with her to say "mama" she just doesn't want to. After I say it a few times, she starts to respond with "blah!" Oh well, she will get there when she is ready. . .

Saturday, June 14, 2008

Wow!

Looking back through some pictures that are now almost a year old. How different things are. This photo was taken while Penny had the BT shunt. Maybe the photo shoot was stressing her out.
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Friday, June 6, 2008

I totally forgot cake pictures

And considering how much work I did on these I most certainly want to share. . .





Monday, June 2, 2008

Birthday Pictures

The weather held up. I was afraid that there would be more rain, but it all worked out. It only rained for about 90 seconds or so. :) And, even though her teeth were bothering her. Penny made it through the day. I hope she had a good time because I sure did.


Here she is eating peanut butter and jelly for the first time. I gave her a 1/4 piece and she scarfed it. I had to give her another piece. I am so proud of my little 1 year old.
I finally got a quasi smile out of this kid. She really makes me work for it.
PLEASE DON'T TAKE THIS TOY AWAY FROM ME. I WANT TO PLAY MOMMY!
Here is Penny with Nathaniel of course, and her friend Dillon that came to play! She was so happy to meet him finally. Can you see that this girl is giving me attitude already because she does not want her picture taken again.
Typical!! She is trying to have a meaningful conversation with her companion and I bet he isn't even listening. MEN!

What a busy Weekend

Pictures from the Little Hearts picnic!
My little girl was quite happy to be held by her mommy. Even though she was teething something terrible!



Yesterday we went to the Little Hearts picnic and we had a fabulous time. We ran into some familiar faces from the Pediatric Cardiology Group right here in Hartford. The boys played. Penny just enjoyed the sun and the wind and the walks. We had such a good time, we cannot wait to go next year.
This was a great opportunity to meet other parents and children with congenital heart defects. There is just so much support out there you know! I saw many many children with HLHS, which still blows my mind considering what a tough road that journey must be. We ran into quite a few children with TOF as well and I got to speak with a few mothers.